5 Years Since the second transplant and general life update!

Someone asked for an update here, and I promised I'd give proof of life every few months for those not Instagram or Facebook. 

HEALTH:

Medically, the biggest milestone is that I've reached 5 years post second transplant! That's quite a big deal! 5 Years is the most often used milestone used when measuring lung transplant success. As you can see below, Google doesn't paint a good picture when it comes to 5 year lung transplant survival rates:

Had a small celebration last weekend at Black Horse Brewery. However on Monday, a week ago, I started having severe pains on the right hand side of my abdomen. Going all the way up around to my right kidney more or less. I went from work to casualty, waited there for an excruciating 3 hours. Eventually they found what looked like 2 cysts on my right ovary. (You might remember I had a hysterectomy 2 years ago due to pre-cancerous cervical cells, but my ovaries were kept to avoid menopause). I was admitted, seen by my lung specialist, who said my blood tests are all normal, and that he would call my gynae. Her response was that ovarian cysts usually aren't a big deal, he can discharge me with pain meds, but that I should stop by and see her on the way home. 

So on Wednesday morning I was discharged at Milpark, and went to see my amazing gynae at WITS Donald Gordon Medical Centre. Her ultra-sound showed a cyst of about 12cm that was bleeding... by this time I'd also started having a temperature, and my white cell count had gone up from the Monday. Not good. She said the ovary was also twisted, and she had to operate asap. So I was booked into ICU at Donald Gordon, with surgery set for 19:00. I was in so much pain i would have volunteered for surgery without anaesthesia at this point. After waiting the whole day I was taken to theatre, given a spinal block (to help with pain when waking up) and general anaesthesia. I woke up just over 2 hours later, luckily with no pain at that point. My gynae showed my some amazingly gross pics of the cyst. It was black and looked something like a kidney. The twisted ovary was also completely dead. My left ovary looked fine so she left that in. To avoid menopause again. 

I was discharged on Friday morning, the post op pain only really started on Friday thanks to the pain management in hospital. It's been fairly rough, but this morning it feels a lot better. This is much worse than my hysterectomy, which was laparoscopic. The cyst was too big to remove laparoscopically unfortunately. I'm not allowed to drive for a month, but will start working from home soon. Can my female reproductive organs, or what's left of them, please stop giving me grief now??? I'm sorry I never used you for babies. Now leave me alone.

I've also started using the Dexcom G6 to manage my blood glucose, it's been LIFE CHANGING. My sugar levels have never been this good and I'm super chuffed. I've never really cared much about my diabetes... I've joked with a few CF friends before saying "diabetes is the least of our worries", or "look... CF will kill us way before diabetes does any damage"... but again, I seem to be not dying, and I can't end up with kidney failure or other diabetes complications down the road. So if I'm going to be here for a while still I need to look after all the organs. (Not that I didn't.... but you know what I mean.)

WORK:

I started a new job in May, my first full time job after this transplant. To be honest I didn't expect working a full time office job again, as I didn't expect living this long after the second transplant! Keeping this body going is an expensive task unfortunately! I also started my post-graduate diploma in Financial Planning, which I'll be doing over 2 years. I've passed this year's subjects at least! So that's on track. It's been awesome studying again 16 years after finishing my degree. I didn't know my brain could do this! 

TRAVEL:

Arno and I were very fortunate to visit Norway and Sweden in July this year. We stayed with friends in Oslo, and did our own little trips from there. It was truly amazing. We saw Stockholm, Kristiansand, Stavanger and Oslo. This past week's unexpected health drama just makes me realise how special trips like these are, and that healthy times need to be celebrated.

LIFE IN GENERAL:

We're planning on going down to Arno's parents in PE again for December, CAN NOT WAIT. I need some beach and sea and fresh air! We will also be spending two nights at ADDO Elephant Park with his parents down there. We'll have Christmas Supper with my family on the 16th of December. We'll also pop in to see my gran in Jansenville on the way down to PE on the 17th of Dec.

We're still living in Pretoria, and work and family is in Johannesburg, so I'm commuting a lot. Need to find some solutions there next year, it's very taxing. My niece and nephew are cuter than ever. Eloise is saying my name and starting to speak, she also has a very definite little personality! The below pic was taken after Adriaan's school concert recently.

I'm struggling with getting enough time to exercise, so that's something I need to work on, and last week's emergency surgery is not going to help with my fitness, so that's really annoying. But there's not much I can do about that now! 

Let me know if you'd like me to blog more often! Then I'll make an effort!

Second Sunday in Hospital

Day 12 in hospital! Nearing the end of my stay I think. Lungs aren't feeling as good as I hoped they would feel after 12 days of IV antibiotics to be honest. Pseudomonas was cultured in my sputum as I suspected, and not sensitive to many antibiotics at all... Lungs are possibly also struggling from the inflammation as a result of the Rhinovirus. So maybe they will bounce back later... I can only hope. Below is a pic of my PICC line.... as requested by some people. It's my best friend at the moment :-p

Right now my only aim is to get mucus out... it is soooooo sticky!!!!! Using Pulmozyme for the last 2 days (Inhaled medication that I haven't used in literally almost 10 years that breaks down mucus and makes it much more watery. I used it often with the old lungs). Walking also helps... as well as lying on my left side. Nothing more frustrating than hearing an orchestra in your chest and nothing comes up when you cough!!!! My infection count has also kinda just been up and down... Meeehhhhh. On the plus side my kidneys are fantastic. I love them.... thank you kidneys for putting up with 33 years of crazy meds. You rock. As do all my other organs minus the pancreas... sorry pancreas, but at least your function can be replaced by enzymes and insulin.

Had another lungaversary this week too, woohoo!! And of course the highlight of my weekend was seeing little Adriaan!!!!! I just want to cuddle him to pieces!!!! The little dude has totally stolen our hearts! Totally the highlight of the year! Not much else to report on. Enjoy the last few days of August!

In hospital

My cold didn't blow over, it just suddenly flew into my lungs. I started being feverish on Monday evening, which carried on throughout the night. On Tuesday morning it felt like my lungs were DROWNING in very gross mucus. It felt like I had instantly lost 10% lung function. It was the first time with these lungs that I needed a wheelchair to get around the hospital. I couldn't cope with walking, even with my portable O2 on max. Luckily I was able to see my Dr pretty quickly and got  admitted, had bloods, x-rays done and PICC line placed for IV's. My veins have been through too much in the last 33 years to cope well with normal peripheral IV access. A PICC line is a long line that gets pushed up from just above my elbow all the way around my shoulder towards my heart. It's an absolute blessing... makes a hospital stay much less dramatic and requiring less needle stabbings (and blown veins)... plus I have more movement available in my hand/arm.

So far the only test results of interest show that I have Rhinovirus (basically a common cold), and had a high infection count (CRP). The latter has come down a lot now at least. I'm currently on antibiotics and a higher than normal dose of steroids, although luckily that is already being decreased. Still waiting for the results of the sputum tests. Feeling loads better already. I managed to walk to the coffee shop twice yesterday (with Chris carrying my portable O2), and lungs starting to feel more open. You know you're feeling better when you are requesting earrings from home at least! (The below wasn't a bad selfie, I was checking out my ears)!

Had some great visitors yesterday... Chris was here the whole day, bringing with him a Latte and my favourite Almond croissant from The Argentinean. Then Andrew popped in with some AMAZING hot chocolate. Chrislie, my mom and Adriaan also came to visit! Haven't seen the little man in almost 2 weeks! I was feeling so sick on Sunday that I didn't want to risk making him sick. He is such a little heart thief! I was also joined for lunch/coffee by Brendan, Marius, Trevor and Ryan later in the afternoon. Even got some flowers! So everyone has really helped to make my Saturday fly past by keeping me busy! I've got some great friends and even more amazing family. Have a great Sunday!

Back home - discharged early.

I was discharged yesterday, after 11 nights in hospital instead of the expected 14. Both sputum samples cultured nothing. So whatever made me feel sick when admitted was obviously sorted. I've been having a really hard time getting rid of the usual steroid side effects :-( Been bloated, feet a bit swollen, body sore, muscles weak and just feeling "woozy"/dizzy, TIRED. So basically horrible all over! Based on past experience I should feel better tomorrow! Really hope that is the case! Guessing I might just be feeling these side effects more intensely because of where my lung function is at.

Still happy to be sleeping in my own bed again nonetheless, PICC line free and with my hubby and kitties. I have some really sick friends there in hospital at the moment and I'm really really appreciating being home. The past two weeks have felt rather intense to be honest.

Another fellow CF transplant lady whose story I've been following since her documentary "Love on the Transplant List", and who I've been Facebook friends with for a few years, posted this blog post two days ago. I'm so sad for Kirstie. Unfortunately I guess none of us live forever, CF or no CF. But it's just so harsh to have to be posting an update like this one when you're 27. I've been soooooo lucky with my almost 9 years with these lungs. All my love goes out to you Kirstie, you're amazing xxx

http://www.dailymail.co.uk/health/article-3916308/Pole-dancer-27-face-organ-donation-starring-documentary-just-months-live-body-rejected-second-double-lung-transplant.html

Sunday in Hospital

Got admitted to hospital on Friday after not feeling well for a few days. Been having a low grade fever and bad headaches and feeling a bit more short of breath. So after a 5 month break from hosp I'm back! Can't complain though, 5 months better than the previous 3-month breaks. And I was worried that this might happen close to Christmas and that would have been way worse.

Before this bout of "sickness" we had a great time last weekend in Secunda meeting the cutest little baby boy Ben!!!! He is soooo flipping cute. Had so much fun playing with him.

Workouts have also been going well before this week... got some new inspirational exercise clothing from Mr Price Sport. Hopefully I won't lose too much muscle in hosp now :-( Will need to make sure I try to keep on moving.

At least I also have some more time to work on my current crochet blanket. This one is for Chris (despite the pink in there!). Going to be epic once done.

Not much else to report on, although I think that was quite enough action for one week. Will be in hosp for 2 weeks.

Happy birthday to my mom!

In less than an hour's time it's my wonderful mother's birthday! Baie geluk met mamma se verjaarsdag, ons is soooooo lief vir mamma en danksy mamma het ons OK uitgedraai :-) My mom is AMAZING, She has always been there for my sister and I (except when I get a tattoo but even that she forgives eventually). She raised us to be the best people we can possibly be, and I often catch myself saying something and totally hearing my mom's voice coming out of my mouth, but it makes me proud because if I turn out to be half the person she is it means I turn out pretty awesome.

I can't believe it's already a few days into June... time seems to disappear when you're in hospital. Winter is here. (I recently binge-watched Game of Thrones so now this sounds weird to say). Hoping to go home tomorrow, feeling way better than when I came in at least.

Finished another blanket and colouring in pic...

Not much other news, craving to get my hair cut when I get out of here, and be home with my hubby (who has been amazing once again while I've been in hosp) and the kitties (who are going to ignore me for a while). And sleep in my own bed with an electric blanket.

Oh and on a funny note, found THIS in the week and I think it's BRILLIANT!!!!

Very quick little update

So the most exciting news in recent times is that we had someone run the Comrades Marathon for Love Life; Gift Life! He is Justin, the owner of Justin Jeffery Biokineticists the place where I go for my weekly bio sessions. It all came together very quickly but was something really cool, and hopefully just the start of more such big things.

We have also set up our Twitter page now (see side panel on my blog) so please follow us and like on Facebook etc! Need all the support we can get!

I'm currently in hosp for my regular Pseudomonas infection. Two weeks of IV antibiotics. Almost half-way at least. Feeling a lot better than a week ago already.

Can also finally post my latest crochet blanket, that was a wedding gift for Ditha and Riaan. Did a new pattern as you can see! Was lots of fun to do. And today is the last day of May!!! Where has the year gone???? It's good though cos it means Anna and Casey's visit is closer, but wow....

GOING HOME!!!!!!

Going home today!!!!!!! And happy 34th wedding anniversary to my parents!!!! Glad they don't need to visit me in hosp on their special day!!!! Busy doing all the discharge admin, finishing nebs, then they will pull out the PICC line (nervous!!!) and then I'm free!!!! Have to come back for check-up in 2 weeks' time.

Have to call the home oxygen people now to confirm delivery today. Then hopefully a weekend of relaxing. Thank goodness this is over for now.

20th Day in Hospital

Tonight will be my 20th night sleeping here. Not much to report of health-wise.... Prednisone lowered more last night to 20mg a day, yay!!!! Finishing the Augmentin antibiotics today. Breathing is as good as it's gonna get I think. Get around OK without oxygen, need to rest after stairs. PICC line still good and pray it stays that way!!!

Had some awesome visitors on Friday.... Patricia (Andrew's sister) came to teach me a new crochet stitch with some lovely red velvet cake to keep us further entertained. Louzanne was here for the day for a meeting and spent the afternoon here which was also such a treat. Andrew and Chris also joined later so had a really really great day.

Chris spoiled me with Krispy Kreme donuts over the weekend! They opened in South Africa very recently, and people have been lining up like crazy to get some. He went before 8am on Sat morning so managed to get us a box! They definitely lived up to the hype and it was FANTASTIC. Lots on insulin was required obviously.

Oh Chris also brought me Steers last week on Thursday night for supper. It was in the top 10 of most amazing meals I've ever had... had a craving and it just hit the spot. At least my appetite is not broken anymore!!!!!!! Hopefully I gain a kilo or so this week.

For the rest I've just been colouring in and started working on my blanket that I was busy with prior to being admitted. Have also been watching Breaking Bad on my laptop. And really missing my kitties. Hoping the week goes by quickly but at the same time I haven't successfully sorted out the oxygen delivery at home and the nebuliser yet, working on that. Also need to reschedule gynae visit that I missed while being in here. And ordering other chronic meds. Little admin office in my bed here.